All information provided is a result of my own personal and clinical experience treating children ages 0-5 with disruptive behavioral problems.
Tantrums/Behavioral Disturbances are a normal part of healthy development. I don’t want people who read about Maddi, or her journey and symptoms get unnecessairly worried that just because their child has tantrums, that they could be sick. I want to explain the difference, and hopefully this will be a tool that you can use, like a “differential diagnosis tree,” to determine if the behaviors your child is having warrants more assessment.
It’s really unclear when Maddi first got sick.
Her symptoms in the months leading up to her diagnosis were very confusing, and could have been easily diagnosed as a disruptive behavior disorder.
Honestly, as a clinician, if a parent had brought their child in and reported the symptoms Maddi was having, I would have thought a) depression b) parenting c) disruptive behavior disorder (ADHD, ODD). So, in retrospect, I can’t be upset that the Doctors originally suggested this could be a parenting problem.
When I think back we started to see changes in her behavior in November 2015, but it was explained by just starting school and being exposed to other children (and their attitudes/behaviors), but the real aggressive and bizarre behavior didn’t happen until April 2016, so it’s hard to put a stamp on an actual date.
This is frustrating, because we have no idea how or why she got sick. Which means, we have no way of predicting when/if she’ll get sick in the future.
In the beginning, as we were trying to identify what was wrong, I wrote a very detailed timeline of her sickness and behavioral issues over the previous few months. It was helpful when we ruled out PANS/PANDAS. Due to her NMDA titers being so high, her Neurology team kind of fixed onto the November 2015 date as the start of her illness, since it was the earliest point of noticeable changes.
Before that point, I’d like to say Maddi was a normally developing child, which means, she had tantrums and behavioral outbursts. Everyone is familiar with the “terrible two’s.” Maddi was never a toddler terror, but after she turned four, she made up for lost time. Lots of simple things became a tantrum: getting dressed, eating, cleaning up, and taking a bath. The difference between these tantrums, and the behavioral disturbances she experienced at diagnosis, was there was a clear trigger/preceding event, a clear motivation, and then a period of de-escalation.
Remember, throwing tantrums is a normal part of child development,so please take a look at my suggestions below that are based on more than 5 years of direct clinical experience, working with parents and children ages birth to five; as well as my own personal experience with raising children over the last 8 years.
This is a guideline to determine if there is something “more” behind your child’s tantrums.
1) There is a trigger or preceding event:
When kids throw tantrums, there is always a trigger, even if not obvious. In early childhood, as we are setting limits, kids tantrum over being denied their way or to test those limits/boundaries in new situations. They throw tantrums when they’re tired, hungry, and overstimulated. Tantrums take the place of spoken communication for kids who just don’t have the emotional maturity to connect their feelings of frustration, anger, embarrassment, or shame, to what’s going on. This is very developmentally appropriate and a normal part of growing up. When Maddi would throw her “tantrums,” it was as if she was filled with rage. The rage had no trigger or explanation. The outbursts would happen at random times, and almost always with no preceding event.
2) There is a clear purpose or outcome in mind for the tantrum.
Tantruming is the fastest way for a child to get their needs met. A lot of parents give into the behavior in order to make it stop. Children quickly learn that if they can make their parent’s uncomfortable using their behavior, they can accomplish their outcome much more quickly. Simply put, tantruming is a “primitive” form of communication for our emotional immature children, and it is an effective way to have their needs met. With most children, the purpose or intent of the tantrum is very obvious: to get their way. In others, it’s not as clear, but identifiable. Again, this is a marker for a developmentally appropriate tantrum. Although a dysfunctional way to communicate, it is communication. With Maddi, her tantrums had absolutely no purpose. She had no specific outcome or goal in mind. She wasn’t trying to get her way. There wasn’t a preceding event that she was trying to mediate. The Tantrums happened randomly, without purpose, and did not stop until it ran its course.
3) There is a clear “ARC” of progression
Tantrums have a clear and defined pattern. I like to call this the “ARC,” when I’m explaining to parents how to intervene and stop tantrums from happening. The preceding event/trigger, followed by a phase of escalation (huffing, crying, protesting), the peak, then a period of deescalation, before returning to normal. This “Arc” is the natural progression a tantrum will follow. It’s only when this “Arc” doesn’t exist, and escalation happens randomly, and without a trigger, is there cause for concern.
4) The behavior stops with redirection or other behavioral intervention.
Taking in mind, that a tantrum has a clear purpose or outcome and behaves as an ARC, a true tantrum will respond to simple behavioral measures that distract or divert the child’s attention onto something else. When a child is at the top of the “ARC,” strategies to de-escalate, such as time-ins, time-outs, quiet time, deep breathing, etc, work to help the child regain a sense of control of their emotional response. When Maddi would “tantrum,” there was nothing that we could do to stop the behavior. There was nothing we could do to prevent or diffuse. The behaviors just happened. They made no sense. Had no purpose. Were not looking for any outcome. They were unpredictable. They were insulated from redirection, time-outs, hugs, etc. They did not follow the predictable pattern of a normal, healthy, developmentally appropriate tantrum.With a developmentally appropriate tantrum, normal behavioral interventions such as distraction and redirection are very effective and helpful. With Maddi, nothing helped to de-escalate the behavior, and any attempts for intervention made it worse.
5) The behavior Stops when the child gets what they want
It’s as simple as that. If your child asks for a bag of candy and you say no, chances are that trigger/preceding event will be followed by crying/whining/begging/screaming or essentially, a tantrum. To know if it’s true tantrum, the behavior will stop if you give in and get the bag of candy. When the goal is achieved, or the purpose of the tantrum is fulfilled, behavior will return to baseline.
6) Trust your intuition
As a parent, you know your child the best. Even if behavior is hard to decipher, pull out a sheet of paper and track. Look for patterns. Look for common triggers or times of the day. Listen to that voice inside of you that says, “something is not right.”
I feel blessed that I am Maddilyn’s Mom. I am a trained mental health professional, with a lot of insight into behavior. I knew something was not right, when her behaviors did not fit the normal pattern of a tantrum.
I hope these guidelines are helpful in decipher your child’s behavior. If you are ever concerned or unsure, contact a trained professional, such as your pediatrician or counselor to have your child evaluated.